Kia and Nial's Story

The Mace family first came to Bluebell Wood a year ago, when their daughter Kia was diagnosed with a mitochondrial genetic disorder. Kia’s mum, Debbie, tells her story.

“When Kia was born, I knew something was wrong straight away. Kia was my seventh child, and she wouldn’t take her milk, and looked very poorly. She spent three weeks in the special care baby unit after her birth, and our first year with her was spent in and out of hospital.

“After her first birthday, she had a tube fitted into her tummy called a PEG so she could be fed directly to try and help her grow. After that, she started to go downhill, and her kidneys and liver started breaking down. Kia still couldn’t sit, roll or stay awake for very long. She then had a central line fitted directly into her heart, to give her the minerals she needed; and has to be on this between twelve to sixteen hours a day.

“Shortly after this, we were given Kia’s diagnosis. The effect this disorder has on her body is awful - her bones are breaking down, and her kidneys are calcifying. It was heart breaking to be told there was no treatment or cure. You don’t ever want to think about planning your child’s funeral before your own. We had to write an end-of-life care plan for Kia, and we cried and cried all the way through filling it out. In the middle of all this, Kia’s younger brother, Nial, was diagnosed with the same condition.

“Kia’s development is that of a 6 month old baby, and Nial is like a 3 month old baby. Neither of them sleep much, and they need their blood sugars testing every hour. If their blood sugar is low, an alarm goes off and we need to give them intravenous dextrose, which takes over an hour each time. They are also both fed through an intravenous tube 24 hours a day, as their bodies can’t cope for even a few minutes without this as they become severely hypoglycaemic. Caring for Nial and Kia is like continuously caring for newborn babies, and they’re both in pain a lot. It can be scary sometimes at home, as when things go wrong, we have to get them to hospital urgently. We feel like qualified nurses and doctors as well as parents, yet amongst all this life still has to go on - we still have to go to work, and the bills still have to be paid.

“Home life for us with Kia, Nial and their brothers and sisters is really hard. Kia and Nial can’t go to school, and we can’t go to baby or toddler groups as it would be very serious if they caught an infection like a cold. This also means we don’t do a lot together as a family, and life really revolves around Kia and Nial.

“The Bluebell Wood sibling group is fantastic for Kia and Nial’s brothers and sisters - they can come and be themselves, and be with other kids who are going through similar things to them. We come to the activity days too and the Christmas party - it’s so nice chatting to other mums who know how I feel.

“When Kia was last in hospital, one of the Bluebell Wood activity co-ordinators, Diane, came and spent some time with her so I could do the school run, and make the other children their tea. This meant Kia wasn’t on her own, and was with someone she knew well. When I got back to hospital, Diane and Kia had made some handprint pictures for me, which I treasure. Life for us is all about capturing as many memories as possible. That’s why being at Bluebell Wood is amazing. There’s something to do for the whole family - and just to simply sit around a table and be a family for a few hours is priceless to us.

“To everyone that’s donated to Bluebell Wood I want to say a huge thank you. Not just from me, but from Kia and Nial and their brothers and sisters. The smallest things make the biggest difference, and you will never know what a difference Bluebell Wood has made to us. Your amazing gift has changed our life.”

Related

Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool.

William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood.

Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition where the body reacts aggressively to an infection, and she died eight days later. Her family spend valuable time together at Bluebell Wood after she passed away.

Four month old Lily died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver.

Chester and Rhianna were born at just 26 weeks old in 2009, and they spent their first year in hospital fighting for their lives. Chester has brain damage and Hirschsprung disease, which means he can’t pass poo normally, and now visits Bluebell Wood for short breaks. His mum and dad, Lisa and Ian, tell his story:

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

You are the reason that children and families can create magical memories and make the most of their time together.
Your donations provide much needed funds to support our families, and to create memories that they will treasure forever.